News & Updates

​A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers and parent groups. The National Institutes of Health has awarded a contract to PatientCrossroads to operate the registry. The company has created patient-centric registries for muscular dystrophy and many rare disorders.

Asian women who consumed an average of 200 milligrams or more of caffeine a day--the equivalent of roughly two cups of coffee--had elevated estrogen levels when compared to women who consumed less, according to a study of reproductive age women by researchers at the National Institutes of Health and other institutions.

Vitamin D may help prevent hormonal changes that can lead to bone loss among those being treated for HIV with the drug tenofovir, according to the results of a National Institutes of Health network study of adolescents with HIV.

Researchers supported by the National Institutes of Health are undertaking a preliminary study to identify the early origins of heart disease among African-Americans. The new feasibility study will enroll children and grand children of participants taking part in the largest study of heart disease risk factors among African-American adults, the Jackson Heart Study (JHS), in Jackson, Miss.

The National Institutes of Health has joined with organizations interested in Down syndrome to form a consortium that will foster the exchange of information on biomedical and biobehavioral research on the chromosomal condition.

Very low birthweight Down syndrome infants are at higher risk for disorders of the heart and lungs than are very low birthweight infants who do not have a chromosomal variation, according to a study by a National Institutes of Health research network.

Teens who were in high-quality child care settings as young children scored slightly higher on measures of academic and cognitive achievement and were slightly less likely to report acting-out behaviors than peers who were in lower-quality child care arrangements during their early years, according to the latest analysis of a long-running study funded by the National Institutes of Health.

Contrary to what researchers had previously believed, most young women and girls who experience a menopause-like condition called primary ovarian insufficiency still have immature eggs in their ovaries, according to a study by scientists at the National Institutes of Health.

The NICHD supports the Brain and Tissue Bank for Developmental Disabilities to help advance research on autism spectrum disorders, Down syndrome, and other intellectual and developmental disabilities.

A gene that causes a fatal childhood brain disorder can also cause adults to develop peripheral neuropathy, a condition resulting in weakness and decreased sensation in the hands and limbs, according to a study by researchers at the National Institutes of Health and other institutions. The study is the first to show that different mutations in the same gene cause the two seemingly unrelated disorders.

Alan E. Guttmacher, M.D., is the new acting director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), one of the 27 institutes and centers that comprise the National Institutes of Health.

The world has lost a great leader in the struggle to improve and enhance the lives of individuals with intellectual and developmental disabilities.

Women and young girls who experience delays in diagnosing a premature, menopause-like condition face increased risk of low bone density, according to new research by scientists at the National Institutes of Health. A delay in diagnosing the condition, called primary ovarian insufficiency, may make women more susceptible to osteoporosis and fractures later in life, the researchers concluded.

The pineal gland -- integral to setting the body's sleep and wake cycles -- may be involved in a broad range of bodily functions, according to a study by researchers at the National Institutes of Health and other institutions.

Eunice Kennedy Shriver, executive vice president of the Joseph P. Kennedy, Jr. Foundation and founder and honorary chairperson of Special Olympics, has been a leader in the worldwide struggle to improve and enhance the lives of individuals with intellectual and developmental disabilities for most of her life. Her vision and unrelenting efforts helped to establish the NICHD in 1962. In recognition of her dedication, Congress passed Public Law 110-154 on December 21, 2007, renaming the Institute as the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

Research on lifelong disorders, such as Down syndrome, has been a fundamental part of the NICHD’s mission since the Institute was established 45 years ago. To build on this research foundation and coordinate Down syndrome research the NIH created its Working Group on Down Syndrome. Down syndrome is the most common genetic cause of intellectual and developmental disability and occurs in one out of 800 births in the United States.

The National Institutes of Health has developed a research plan to advance understanding of Down syndrome and speed development of new treatments for the condition, the most frequent genetic cause of mild to moderate intellectual disability and associated medical problems. The plan sets research goals for the next 10 years that build upon earlier research advances fostered by the NIH.

The first large scale study of its kind shows that effective screening for Down syndrome is possible before the 14th week of pregnancy--earlier than previous screening regimens have permitted, according to a study appearing in the April 2 New England Journal of Medicine.